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Son resistive to necessary resection surgery for Oligodendroglioma

CatherineSch.
Posts: 14
Joined: Oct 2011

My son 36 years of age was diagnosed with a Oligodendroglioma - Grade "2-ish", in 2006. Was asymptomatic, except for a Grand Mal Seizure, which brought him home to Strong Memorial Hospital for surgery. (He resides in Florida) Surgery went well and John recovered here for a couple of months, as he couldn't fly til intercranial pressure was of normal status. Nothing else at the time was suggested, (radiation or chemotherapy), except to be monitored every 3 months, with Tessla 3 MRI's and then every 6 months, after 1 year of being clean of tissue recurrence. It has been 5 years, and this past August was found to be "creeping" again, and advised to schedule a "debulking" resection, and biopsy before the end of this year, as tissue spreading is slow with this type of tumor. My son with this new and different report, (after 5 years of being ok and sent on his way home to live his life "free and clear",) now has this looming before him, as well as 6 weeks of radiation, following surg. We also found out this visit in August, that these BENIGN tumors, can transform themselves into malignant form. Our Neruosurgeon said, that while John has youth in his favor, these Oligos ALWAYS transform themselves with age. Understandably this was shattering, devastating to hear, and John left Rochester feeling depressed and defeated. He has since shut down, will not talk about it to me, or his live in girlfriend, who is kind and patient with him regarding serious conversation, yet wants him to open up, and address this much needed attention. The NP for the Neruosurg. has recently called and talked to John, and John asked how far he could push surgery out. She has given him December 1 as last minute time. (He started new sales job last January, and this presents alot of extra anxiety, as he never indulged this piece of medical history, and fears they'll let him go.) This has been so difficult for all of us, and want him to be as vigilant, as he can, with this "Chronic" condition. Though I get it, I understand how scary, and life impacting the whole thing is for him to have to now repeat surgery again, moving in with us, for longer that he'd like, not working, being away from his home and friends,- he needs to deal with this, providing him with hopefully years of being clean and clear again. There is too much at stake with his " back burnering". I have sent him cards, and tried to call, but he's currently not taking my calls, as I represent the looming ordeal home here, he needs to face. It frightens, and consumes my every day, wondering how this growth is moving, and at what rate, as he resists....It was left with NP that he will call her this week, and let her know.
I have been so moved by this blog, and its many folks, and young people confronted with these challenges. I feel especially connected to Cindysue, and her son David, and her positive nature, and his remarkable strength and courage. A Mother/Son bond is special, and have always shared a wonderful close relationship with John, unfortunately feeling more removed right now, when I want to be there for him. Its soooo hard, and I would appreciate any thoughts or ideas, or anything anyone has to offer. I would be grateful, and will keep you posted as how this transpires.

AshleyWF's picture
AshleyWF
Posts: 46
Joined: Aug 2011

Hi,

First I would like to say, I am so sorry to hear that this tumour is making an appearance once more. You and your son will be in my thoughts and prayers from this point forward.

I am in a similar situation but yet very different. My boyfriend has not refused surgery, but is very much refusing to believe the seriousness of this tumour. He as well has grade 2 Oligodendroglioma. He had surgery in August. They removed what they could, but were unable to remove it all, due to the location of part of the tumour. Wasn’t the news we wanted to hear, but is unfortunately our reality now. I took some comfort in your post, as I had not read anyone else being advised to take the “wait and see” approach, they seem to be around the same age at diagnosis as well. I have continuously reached out with this approach, not understanding, wondering why they wouldn’t’ do everything they could to kill what remains now or prevent reoccurrence. My lack of knowledge in all of this shines through, as the more I read, the more I learn, this is going to be a continuous battle.

“He has since shut down” Instead of completely shutting us out, my boyfriend has taken the “joking” approach. If you try to be serious about it, he snubs it off, makes a joke and changes the subject, even in the doctor’s office. He has gone back to work against his doctors wishes (they did not tell him not to go back to work, but advised against him running heavy machinery) and is living life as though nothing has happened. This could be a good thing for him, a positive fighting attitude, but I think there does need to be some sort of acknowledgment of everything that has just happened, and what his future looks like now. Maybe this is just me!

When it comes to getting him to open up, I usually ask small questions here and there. The one thing that did get him talking was seeing the large amount of information I have around the house. Different print outs, books, pamphlets, things I have received in the mail from the tumor foundation. He was a little more curious as to what I have been finding out, so I just throw out small pieces of information here and there, which sometimes sparks a conversation that allows me to ask questions about what he may be thinking, what the future looks like to him now. It was in this that I was able to have him call about getting a second opinion. As he was content in just leaving it with the doctors, not looking into anything and moving on with life. Maybe I pry too much, but it’s only out of love, This is why we do what we do, right?

Maybe in speaking with his live in girlfriend, you can find out a little more, maybe she can give him the little push he may need. My boyfriend does not speak to his mom at all about this, I sat next to them as he told her in a very cold way that “this is my fight, not yours, you are not the one going through this, and I don’t want you letting the whole world know” It’s sad to see, sad to hear and hard to watch as they push the ones they love most away. There is usually though, someone they will talk to. I am praying you will find that person and be in close contact with them.

This discussion board brings so much comfort to so many people. I look forward to hearing what transpires with you and your son and if I can be of any help in any way.. I’m here.

Ashley

CatherineSch.
Posts: 14
Joined: Oct 2011

Hi Ashley,
So nice of you to respond with comforting input. We all struggle in one way or another.
I did call John last night (he resides in Fla. we NY), and he did take the call, but decided to "tip-toe", as not to ruin the chance to converse again. He did not "go there", and we chatted briefly, and my husband talked to him for 1/2 hr, again small talk. I have such a hard time, not wanting to scream, "LET'S GO!", but know I'll lose him again for days. Texted his girlfriend this am, and she said, he was going to call Hospital (NP), today, but as she even says, "we'll see". So frustrating and helpless a place. The days of being in charge as a parent are over, for the most part. I refuse to let him as time moves toward November (which is when they want him to come home) just forget it the plan, and Mother Bear WILL surface. Tears always get to him best. I'll do what I have to do, is all.It IS OUR FIGHT! They're our 'children' always to some "inner" degree. (think it's the heart region....)It is all out of love, why we are there, wanting them to continue with a long, healthy life, and to be the best they can be. Somehow, I feel he's being selfish, and that has never been my son, especially with something so precious, as life, and not tormenting all of us who love them... I hope your boyfriend softens with is MOM, that has to be so difficult for her, it can make me cry. Men for the most part, have such resistiveness to communication, especially when the topic is so ultra sensitive, and intense. Keep at him, gingerly, and preface every attempt to "go there' with 'i love you'. What else is there?
My very best wishes to you all, (and Mom)I can't tell you how much this site has helped, and your support and prayers I'm grateful for, and right back at you..
Please keep me in the loop, so good talking to you..
Catherine

AshleyWF's picture
AshleyWF
Posts: 46
Joined: Aug 2011

Hello again,

I’m so happy he took your call! Even though it may not be what you are wanting to talk about, maybe right now, just speaking, is offering him support, defiantly opening up the lines of communication at least!. I think Denial is exactly it, but I do not believe it isn’t constantly running through their mind, more of a front I guess you could call it. Remember, gods hand is in all of this! Even though he may not be acting as quickly as you may like or we all may like for that matter, god hears your prayers, god sees him and is watching over him. Things I’m sure will move forward.

I remember being frustrated, and from some of my posts on here , you can hear the anger when you are reading them. “wait and see” was so hard for me. I felt like no matter how loud I’d scream “WHY!” I never got the answer I was looking for. Sometimes it’s taking the time to breath, relax, close your eyes and have some faith (it is very much easier said than done and sounds very preachy but it has worked for me). Even though the doctors said Dec.1 … there are still 44 days until then(I know the NOW feeling though and I sympathize with that completely).. That is a lot of thinking time, a lot of time to have a few more of those simple conversations that he seems to only want to have THIS WEEK! Next week could be different. His girlfriends “we’ll see” could be simply because she is trying to find a way to approach him. She can obviously see he’s upset. I will pray for you all, your son, his girlfriend and you and his father, as well as any other family members that are affected by this.

Jordan is going in for his second opinion on the 31st. I hate the waiting. It has already been 3 weeks since they said they were going to take the “wait and see” approach. This defiantly has become less irritating as when I first heard, but anxiously awaiting the second opinion to hear what another doctor might have to say. Maybe hearing that way is best twice, will take away that gut feeling that they are wrong. Look at me, acting as though I know it all and what’s best, if only that were true. I have told myself, I will use this time that I have from now until then, to do something productive. Gather all the questions I haven’t asked, questions that I didn’t feel were answered, questions, questions, questions that I have in my head constantly… I will gather and have them ready for our next appointment. Trying to fill the time between now and then. Waiting and deadlines are so hard. I guess my next prayer is for patients!

Take care of yourself, we are no good support wise if we run ourselves down. Your health and sanity through this is just as important!

Ashley

CatherineSch.
Posts: 14
Joined: Oct 2011

Thanks to all for prayers. I arrived home to a ringing phone, and it was the NP from SMH. here in Rochester. She had jsut called John, (as it has been a week since they talked, John requesting time to think about it.) Anyways, he told her he would come home around the beginning of December. She has him 90% scheduled for MRI on 6 or 7, and surgery for December 12th. MRI has to be repeated, as last was in August, and want a real recent picture again, in the event they're looking at anything different..
He did chose the latest advised date, but he's dropping his shield, and going to face it. Says he wants to take train home at end of month, (I hope- Xmas), as flying would be a couple of months out (intercranial pressure) So, at least we have a plan... Now that he has committed to Rochester, he'll probably renew communications with all of us here. I haved missed him, for sure.
Ashley, I was wondering if Jordan evers reads these chats? Wondering if it would help John, but plan on letting the girlfriend know of site.. I praised it highly with NP today, and lauded its ability to calm and comfort, and inform, and give hope.
Thank you again, and keeping chipping away with Jordan - it IS why we do what we do. We want them around a long time, and cherish them.

God Bless,
Catherine

AshleyWF's picture
AshleyWF
Posts: 46
Joined: Aug 2011

Catherine,

I am so happy and relieved to hear that your son has decided to come home for the necessary next steps.

Jordan does not read these discussion boards. Jordan really knows nothing about his cancer and has decided to keep it that way. He does not ask questions in the doctor’s office, I’m not sure he even listens to the questions and answers we ask and receive from the doctor. He is content doing whatever he is told he needs to do, and just goes on living like nothing has happened or changed. So…. We search, we dig, we ask, we wonder, we cry… but kind of on our own, as he is not responding to it emotionally in any way. I had one break through, one night and that was it. This is when I was able to have him call for a second opinion… He said a few things which are pretty private and I keep close to my heart, shed a few tears, and that was it.

I pray for the best outcome for your son! I pray for you and your family as well. Please keep us updated Positive things are happening!

Ashley

CatherineSch.
Posts: 14
Joined: Oct 2011

I can't imagine, how you cope with not "going there" in conversation. This is so like my son, and don't know how his gal deals with his shut down style.
You certainly love him very much I can perceive, and hope he lets you in more, soon.
You're quite a lady - Keep your chin up, and continue to use this discussion board for the support you need. I'm here for you, as you have been for me. Merci.
Catherine

KellyAK2011
Posts: 22
Joined: Oct 2011

I am so happy to read that your son is going to have the surgery. It is really awful that he was never aware of the nature of these tumors. There is never really a "benign" Oligodendroglioma. They do progress. I find it unbelievable no one ever told him that. I'd be extremely upset too if I was left with the impression I was just fine when really there was an insidious invader squirreling around. Awful!

I have a Grade 3 AO, and all the research I've seen states they progress going up in grade and agressiveness. I was not diagnosed until I had a seizure in early September of this year and no one knows how long it's been there, if it began as a grade 3 or grew from a lower grade tumor. All I know is it is a high grade tumor now (actually it isn't there anymore as I had it resected 3 weeks ago yesterday) and I am going to fight like (*&% to beat it and will exhaust every option for treatment. I began radiation tomotherapy on Monday along with Temodar - 42 days straight of that regimen, followed by 30 days off Temodar and then I cycle onto a double dose of what I take now - on for 5 days/off for 23, on for 5 days/off for 23 for 6 months unless there is disease progression. Then the docs will look for other options. If I don't win, well I have an awesome Creator and I'll go to be with Him. The terrible thing is that I will leave people behind that love me, their pain effects me greatly. Knowing they will be sad breaks me in two. That is heartbreaking for me.

CatherineSch.
Posts: 14
Joined: Oct 2011

I felt so moved reading your note. I perceive a strenth and courage in your writing, and hope you can beat this challenge.
Our Neurosurgeon, talked more frankly this past August, regarding John's tumor. I have to say it was more shocking, as they tended to sugar-coat it,( or maybe their trying to stay on a positve note,) for the last 5 years. Maybe it was not asking too many questions,as subconsciously I didn't want to explore anything darker, or scarier with John sitting there. I wanted to cling to only the good outlooks, "Well if you have to have a brain tumor,this is the one to have", comments made me think he would be fine "forever". As I say, in August, he really threw the reality of possibilities, and eventualities at us. Now we deal, and stay on top of it, with aggression. What option do you have?!

I will keep you in my prayers, and persevere with everything you've got. I'm rooting for you, and your loved ones.
Its funny (peculiar, not HaHa), how everyday trivial conversations with friends you may run into, just takes on a new meaning. DON'T SWEAT THE SMALL STUFF, I want to scream at them. Life is precious, and we need to focus on those REAL things, day to day.
My very best to you,
Catherine

KellyAK2011
Posts: 22
Joined: Oct 2011

Thank you for your kind words Catherine.

Everything you wrote is something I identify with. I have heard the exact same thing regarding my tumor..... "If you have to have a brain tumor, this is the one to have". I cannot imagine how it must feel to be the mother of a son with this terrible disease - you must feel so helpless. Although it sounds as if John is coming to terms with what is ahead. I encourage you to contact your local library and request the research librarian to access the EBSCO data base for journal articles written in the last 3 years on treatment of Oligo's and send the links to you. Knowing what questions to ask the doctors about treatment goes a very long way. This is how I ended up being treated fairly aggressively for my disease - I knew what to ask for and I received it even with it being "off" protocol. However, many patients with my grade/type of tumor receive the same treatment, so it must not be all the "off" protocol.

Thank you for your prayers - one can never have enough of them or people praying them! I rest peacefully in knowing there is a plan and that He has allowed this for a purpose, even if I am clueless as to knowing what it is.

You are soooo correct in your comment about trivial conversations! A dear friend of mine and I were just talking about how many things seem unimportant after being where we are together. She is heartbroken over this, but she knows the Lord and knows that when and if I go to be with Him, it will be ever glorious. Regardless, it is hard for her to think of the potential outcome.

Thank you again for your encouragement and kind words. I will keep your family in my thoughts and prayers.

Blessings ~Kelly

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